Re: HELP!!!!---->Joan
From: anonymous@obgyn.net
Mon Jan 31 19:25:19 2000
Joan,
Your Welcome and i sure will.
Hugs,
Belle.
-----Original Message-----
From: joan <anonymous@obgyn.net>
To: Multiple recipients of list ENDO <anonymous@obgyn.net>
Date: Tuesday, 1 February 2000 7:15
Subject: Re: HELP!!!!---->Joan
>We probably should, since there doesn't seem to be any info out there on
>this stuff. I don't know about you, but this frustrates me to no end.
Please
>do keep in touch with me if you find ANY info, please pass it on. Thanks
>again. Joan
>
>>From: anonymous@obgyn.net
>>Reply-To: anonymous@obgyn.net
>>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>>Subject: Re: HELP!!!!---->Joan
>>Date: Sun, 30 Jan 2000 22:25:28 -0600
>>
>>Joan,
>>
>>You are more than welcome,i am always glad to help a fellow endo sister.
>>l understand totally how you feel,i felt that way also.
>>We will have to keep in touch and when we find information on it we can
>>send
>>it
>>to all 3 of us lol,we can start our own group.We should start by
>>shortening
>>endosalpingosis to Endosal, just to make it easier.
>>HUGS,
>>
>>Belle.
>>-----Original Message-----
>>From: joan <anonymous@obgyn.net>
>>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>>Date: Monday, 31 January 2000 3:08
>>Subject: Re: HELP!!!!---->Joan
>>
>> >Belle,
>> >Thank you so much for answering my plea for help!!! I was beginning to
>>think
>> >that I was the ONLY person in the world who has ever had this stuff! I
>>can't
>> >find ANYTHING on the web about it either! You really have helped...
>>Thanks
>> >again! So very much! Joan
>> >
>> >>From: -Tinker-Belle-@msn.com.au
>> >>Reply-To: endo@obgyn.net
>> >>To: Multiple recipients of list ENDO <endo@forum.obgyn.net>
>> >>Subject: Re: HELP!!!!---->Joan
>> >>Date: Sun, 30 Jan 2000 04:01:04 -0600
>> >>
>> >>Hi Joan,
>> >>
>> >>l am so sorry you have had such pain and have been through such a
>> >>traumatic
>> >>time.
>> >>l also have Endo and Endosalpingosis,it happens in women with Endo and
i
>> >>was
>> >>told it was about 1 in 200,so we are very rare cases.They don't know
>>much
>> >>about EndoSalpingosis, they do know its the lining of our tubes which
>>is
>> >>misplaced.They think it may cause pelvic pain, i only know of one other
>> >>girl
>> >>with it and she has had ectopic pregnancies and quite a few
miscarriages
>> >>but
>> >>this is all i have been able to research.l am still researching it and
>>if
>> >>i
>> >>find anything i will let you know.There is not much out there,abit like
>> >>endo
>> >>was when i first began researching for my documentary.
>> >>l hope this has settled your fears,i still would recommend you find an
>> >>educated endo specialist,that is up with all the latest research,as we
>>have
>> >>a new disease that has just been given a name and we need a doctor who
>> >>knows
>> >>Endo inside out and who also knows at least about Endosalpingosis.Good
>>luck
>> >>and if i can help in anyway just drop me a line.
>> >>Best Wishes and Many Pain Free ones.
>> >>
>> >>Belle.
>> >>
>> >>-----Original Message-----
>> >>From: joan <jlove1214@hotmail.com>
>> >>To: Multiple recipients of list ENDO <endo@forum.obgyn.net>
>> >>Date: Sunday, 30 January 2000 3:57
>> >>Subject: HELP!!!!
>> >>
>> >> >Ok ladies, I may just have to kill my doctor!!!! I had my laproscopy
>>in
>> >>Dec.
>> >> >he told me that it "looked" like endometriosis. And began treating me
>>as
>> >>if
>> >> >that's what I have. He gave me the 3 months of lupron. I went
>>yesterday
>> >>to
>> >> >discuss hysterectomy with him, because the lupron isn't working. He's
>>now
>> >> >telling me that the pathology on the biopsy he did came back as
>> >> >endosalpingiosis. He doesn't even know what that is... He had to look
>>it
>> >>up.
>> >> >All he could really tell me, is that it is not cancer, and it will
not
>> >>turn
>> >> >to cancer, and that it is "associated" with endometriosis. He's
trying
>>to
>> >> >tell me that the lupron should have stopped my cramps, and since I'm
>> >>still
>> >> >having them, that either their all in my head,or that their from
>> >>"something
>> >> >else." That I can have a hysterectomy if I still want one, but "what
>>kind
>> >>do
>> >> >I want?" Can you believe that? What KIND do I want??? He asked me if
I
>> >> >wanted something stronger than Motrin for the bad days.. When I said
>>yes,
>> >>He
>> >> >asked me "what do you want?" I told him that I have some demerol at
>>home,
>> >> >and on the really bad days, it doesn't work, so he gave me Tylenol
>>with
>> >> >codeine... TYLENOL WITH CODEINE!!!! When demerol doesn't work!!!!!
I'm
>> >> >trying to get a new doctor... Since I have to treat myself here, am I
>> >>going
>> >> >to have to do my own surgery too??? AM I over reacting? My head is
>> >> >swimming... I think I might have to shoot him or something... Does
>>ANYONE
>> >> >know ANYTHING about endosalpingiosis??? I can't even believe this
>>crap!
>> >>Can
>> >> >you say INCOMPETENCE? I printed the Heather letter, and I'm sending
it
>>to
>> >> >him today! I tried to tell him that after reading some of all of your
>> >> >stories and problems with the lupron, that it doesn't seem to work
for
>> >> >everyone, and it doesn't stop everyone's pain, he told me that I'm
>>wrong,
>> >> >That if the pain was related to my endosalpingiosis, that it would
>>stop
>> >> >hurting when I stopped ovulating. I am not an idiot, I am in real
pain
>> >>here!
>> >> >Maybe not as bad as it was before the lupron, but I am definately
>>having
>> >> >pain! I asked him to do a MRI just incase there is something else
that
>>we
>> >> >may be missing. I don't know if it will do any good, but I figure it
>> >>can't
>> >> >hurt either. Right? He also keeps getting me confused with his other
>> >> >patients. He'll say something, and then say "oh no, that's not you"
If
>>I
>> >>let
>> >> >this man perform surgery on me, is he even going to do the right
>>surgery
>> >>if
>> >> >he can't keep his patients straight???? HELP!!! I'm losing my
>>mind!!!!!
>> >>Any
>> >> >info that anyone has please pass it along!!! I'm freaking out!!! Joan
>> >> >
>> >>
>> >><< endo@obgyn.net.vcf >>
>> >
>>
>><< endo@obgyn.net.vcf >>
>
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